Pot as medicine intrigues families with epileptic kids

Monday

May 5, 2014 at 12:01 AMMay 5, 2014 at 9:17 AM

Ali and Adam Oliver aren't sure what they'd think about medical marijuana if it weren't for Alex. As it is, 5-year-old Alex, the younger of the Upper Arlington couple's two sons, has endured seizures every day for most of his life, some so severe that he has to go to a hospital, where doctors force him into a coma to stop the erratic brain activity.

Misti Crane, The Columbus Dispatch

Ali and Adam Oliver aren't sure what they'd think about medical marijuana if it weren't for Alex.

Maybe they'd vote no if the issue were on a ballot, or not care much either way.

As it is, 5-year-old Alex, the younger of the Upper Arlington couple's two sons, has endured seizures every day for most of his life, some so severe that he has to go to a hospital, where doctors force him into a coma to stop the erratic brain activity.

Alex has Dravet syndrome, a form of epilepsy. Children with the disease are becoming the new face of medical marijuana as families flock to Colorado for a type of cannabis oil that in some cases is being credited with remarkable improvements.

The oil is named Charlotte's Web, for a child whose hundreds of daily seizures are reportedly all but gone. It has little THC (which produces the high) and a lot of cannabidiol, which is thought to work against the disease. The Olivers want to be able to buy it here rather than uproot their boys and leave family members and good jobs - Mr. Oliver is a teacher in Upper Arlington schools; Mrs. Oliver works at Nationwide Children's Hospital and Mount Carmel West hospital.

The Olivers back an Ohio effort to get medical marijuana (and hemp for industrial use) legalized in the state.

"Hopefully, Ohio will pass it this fall. We want the opportunity to have that choice," Mrs. Oliver said.

This fall is a long way off for a movement that scrambled this weekend to organize and train volunteers who will gather signatures at the polls on Tuesday. Without more than 385,000 valid signatures by July, the Ohio Rights Group's issue won't go before voters this year.

If it makes it on the ballot, supporters are up against a political contest that experts say could cost tens of millions of dollars. That said, it could be a good time for the issue, according to a recent Quinnipiac University poll that found that 87 percent of Ohio voters support medical marijuana.

"I think people realize this is a moral issue and it's a civil-rights issue," said Lissa Satori, the executive director of Ohio Rights Group.

"This is not just grandma smoking weed to alleviate her pain. It is really commercialization, and there's a lot of money to be made across the country for folks who kind of focus and prey upon other people's addiction," said Tony Coder, the group's assistant director.

Coder doesn't dismiss the potential benefits of marijuana but said it should not be used unless it goes through the Food and Drug Administration and doesn't make people high.

A pharmaceutical company is currently working to study a potential cannabidiol drug called Epidiolex for children with epilepsy.

"It's a much safer way. You know the dosage. You know what's in it. You know what these kids are going to get," Coder said.

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People use marijuana products legally where they can and illegally elsewhere for a long list of medical conditions - chronic pain, depression, cancer and glaucoma among them. There is no shortage of anecdotal evidence of benefits, but the science is limited.

Last week, an American Academy of Neurology review found that research suggests benefits for people with multiple sclerosis but wasn't strong enough to show benefit against other conditions, including Huntington's disease and epilepsy.

Researchers who want to study marijuana face strict federal regulations that limit how and what they can test. There also is the problem of figuring out dosage with a natural product that varies from plant to plant and comes in more strains than ever.

Edible products are especially hard to study because there's much variability in how different people react to the same amount, said Kari Franson, associate dean for professional education at the University of Colorado's Skaggs School of Pharmacy and Pharmaceutical Sciences.

Franson, who has studied cannabis, said there is a lot of discussion about how to better research marijuana, but the work is in its infancy.

Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment, who along with Franson spoke at a recent health-journalism conference, cautioned that the anecdotal stories of vast improvement in children with epilepsy are just that.

"You only hear about those who do respond to the oil," Wolk said. "Be wary of the miracle-cure label."

But Wolk said he's not willing to dash the hopes of well-meaning parents and wants data to show exactly what they might expect with the oil.

The Epilepsy Foundation also wants the data and has urged the federal government to end restrictions that limit research, said Kathy Schrag, the executive director of the foundation's Cincinnati and Columbus office.

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Dravet syndrome appears in a child's first year, with frequent fever-related seizures followed by other types of seizures. Some go on for days. Children typically have developmental delays, and some have autism. Alex is one of those children.

Families typically use a cocktail of pharmaceutical drugs, sometimes including one that isn't yet approved here but can be shipped from France if buyers clear hurdles with the U.S. government.

The Olivers pay $1,200 a month for the drug, which seems to help but has not eliminated Alex's seizures.

"I wake up every morning at 3 a.m. and make sure he's breathing," Mrs. Oliver said.

The Olivers say they know that cannabis oil is not a sure thing, but they want to try it here without fear of arrest.

Paula Lyles was a lifetime Ohioan - first Upper Arlington, then suburban Cleveland - when she decided last year to move to Colorado with her 19-year-old daughter, Jordan, for the oil. Her husband and their other daughter still live in Cleveland.

Lyles said she had a strong belief in traditional medicine until she saw what it was doing to Jordan, who has Dravet syndrome.

"I saw the drugs steal away her skills and the ability to talk clearly. I don't believe doctors are trying to do anybody harm, but sometimes the cure is worse than the disease itself," Mrs. Lyles said.

Jordan takes a small amount of oil daily, like a cough syrup. Her seizures aren't gone, but they've diminished significantly, and Jordan takes about 60 percent less prescription medication, Mrs. Lyles said.

"It should be an option in every state," she said. "This has turned into a political issue, but this is a medical issue."